End-of-life challenges for families

It was the second time in less than a month that a request came to me to assist families struggling with decisions about loved ones in serious end-of-life situations. The circumstances were similar. Members of both families were struggling with whether or not and, if so, how “to let go.”

One loved one was in an intensive care unit and the other was in a regular unit in an acute care hospital. The outlook for both appeared dismal from the perspective of the medical staff who, according to the families, had done everything reasonably possible to salvage their loved one – but things hadn’t gone well and now the end was growing near.

The families wanted to do the “right thing” not just as a family but also “Jewishly.” In both families, the degree of observance was modest but the reverence for Jewish values and traditions was high. They had received some input from rabbis but were struggling with whether the advice truly reflected the values they shared as a family and the values of their loved one. Not an easy challenge for a devoted and loving family.

The question for me was what I might offer in my role as geriatrician, and one who had done post-graduate studies in ethics. I understood the limitations of my background and training but was also aware of the many situations I had witnessed and my great interest in and respect for the teachings and values of Judaism. I knew that not being a rabbi, my views were a secularized composite and understanding of the cases I had observed and the education I had been involved with over many years of practice. The challenge was mainly at the human level – the struggling with the notion of “letting go” of a beloved member of the family.

How a family deals with such heart-wrenching dilemmas can be addressed from many perspectives – ethical, legal and personal/family.

Ethically, most families want to do the “right” thing. Their understanding of the ethical approach to such decisions is usually a reflection of the principles and values on which they were raised. If there was a Jewish (strongly religious or not) component to such values, one hears often that families do not want any suffering for their loved one. Such concerns are fairly universal across all religions and ethnic groups. Families often struggle with concepts of their duty to provide food and drink, often translated into the more clinical “nutrition and hydration,” but the association with the loving act of feeding often cannot be disregarded. Promoting sanctity of life, a common theme in the three monotheistic religions, often competes with the secular concept of quality of life and avoidance of suffering.

Ontario law expects family decisions to reflect what they believe their loved one would truly have wanted or what would be in their loved ones’ difficult to define “best interests.” Many family members do not truly know their loved one’s wishes and values, as such issues are not usually discussed.

But it is at the human level that the real challenge exists. Time is needed to discuss, and to explore feelings and values. At some point, it becomes necessary to make a difficult decision.

I often counsel families that whatever decision they make, it is the “right one,” whatever the outcome. Second guessing afterward with “what ifs” is a terrible process that can lead to lifelong doubts and recriminations. Talk and feel and share as a family, and then make the best decision that you can. That is all any loving family can do.

Dr. Michael Gordon is medical program director of palliative care at Baycrest and co-author with Bart Mindszenthy of Parenting Your Parents (Dundurn Press).